Owning a Piece of Jonathan

When Dan and Debbie Greenberg’s son was born with a deadly genetic disorder, the Homewood couple vigorously campaigned to help find the cause, even donating autopsy samples after he died. Eventually, the doctor they assisted uncovered the lethal gene—and then, to the Greenbergs’ amazement, quietly patented it. Now they are suing, in a case being closely watched by the booming biotech industry

By Lucinda Hahn

Published Aug. 4, 2010

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In 1904 in Australia, a man known as Mr. Doodeward acquired a stillborn two-headed child and displayed it in a traveling freak show. To his surprise, police confiscated the specimen, claiming the exhibit was obscene. When Doodeward claimed the two-headed baby was his property, and sued to get it back, the judge faced a perplexing question that haunts courts even today: Can anyone own a human body or its parts?

The judge knew that if he ruled the corpse was not Doodeward’s property, then police might have to confiscate bodies from museums, medical institutions, and archaeologists. Unwilling to open that Pandora’s box, he ruled that if a corpse or part of a corpse had been altered for science or medicine, it acquired value and became property. Doodeward’s specimen, the judge ruled, had been altered by being preserved in formaldehyde. Mr. Doodeward got back his two-headed baby.

The logic in the ruling—that only those who scientifically transform bodies or body parts can own them—reverberates through courtrooms and medical facilities today, often in ways that boggle the mind. In the 1980s, for instance, doctors at the University of California, Los Angeles, who were treating a leukemia patient discovered that certain chemicals in his blood had special curative powers—so special, the university patented them and made millions selling the rights to a biotech company, all without the knowledge of the patient, John Moore. When Moore sued, and his lawyer made the seemingly reasonable argument “that a patient owns his body, his own tissue, his own DNA,” the California Supreme Court disagreed. What happened to Moore might have been unethical, the justices ruled, but it was not illegal: People, the court said, have no property rights to their own bodies.

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That view persists even now, despite the fact that human body parts, such as Moore’s cells, can be worth a fortune to the multibillion-dollar biotechnology industry. In part because the stakes are so high, patients are fighting ever harder for the rights to their own body parts. Some of the legal wrangling has centered on human genes—including a court battle waged by Dan and Debbie Greenberg of south suburban Homewood. The Greenbergs had two babies with Canavan disease, an inherited brain disorder that usually kills in childhood. In the 1980s, the Greenbergs persuaded a doctor to try to find the gene that caused Canavan. Along with dozens of other families, they gave him money and samples of blood, urine, and tissue—even autopsy samples after their first child died. To everyone’s amazement, the doctor identified the Canavan gene in 1993.

A triumphant ending—until the families discovered that the doctor and his employer, Miami Children’s Hospital in Florida, had patented the gene. The implications left the families shocked: The hospital had dominion over who could use the gene and how—from researchers who wanted to use it to find a cure for Canavan, to lab directors who wanted to administer carrier or prenatal tests. It could profit off the gene, too: By one estimate, the hospital is earning about $375,000 a year from charging royalties on every test involving the Canavan gene. (A hospital spokesperson disputed this figure, saying the revenue is significantly less.)

The commercialization of the gene infuriated the Greenbergs and the other families who had made such painful, personal contributions to its discovery. After unsuccessfully negotiating with the hospital, they filed a lawsuit. “I gave myself and my son and anything [the doctor] wanted to help wipe out this disease,” says Frieda Eisen of Brooklyn, New York, whose son, Jacob, had Canavan. “I thought it was more of a donation for the common good of mankind, not for a hospital to profit on. Jacob was as much a part of this discovery—all the children were—as the hospital. Why should they make money on my child, on everything my child donated?”

That’s a question the courts may decide. Greenberg, et al. v. Miami Children’s Hospital, et al., filed on October 30, 2000, in federal district court in Chicago, is commanding attention because it may help establish new rules for the ownership of human genes. The suit contends that without the families’ informed consent, the hospital had no right to patent a gene that was discovered using the patients’ body samples. In a particularly fortunate turn for the plaintiffs, the case has been transferred to Florida, a state that has swept aside the archaic legacy of Doodeward and stepped into the brave new biotech world. Under Florida law, people do own their own body parts, and a particular statute protects their DNA. “That statute could make things interesting,” says one of the plaintiffs’ pro bono lawyers, Lori Andrews.

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The Greenbergs first held their newborn son, Jonathan, in Ingalls Memorial Hospital on June 12, 1981. “He was beautiful,” Debbie says. “He looked perfect.” An occupational therapist who works with children, Debbie had dreamed of this day since her lonely upbringing in Peoria. “Ever since I can remember, I wanted to be the mother of a large family,” she says. “I wanted two boys and two girls.”

Dan, a real estate lawyer, had gone queasy during his wife’s labor. But his world righted as he took his first glimpses of Jonathan’s dark eyes and thatch of black hair, features that reflected the Greenbergs’ proud eastern European Jewish ancestry. What’s more, the baby had excellent timing, arriving on the couple’s fourth wedding anniversary. “We couldn’t have asked for a better gift,” says Dan, who was 26.

Dan had met Debbie during her freshman year at the University of Illinois at Urbana-Champaign. A handsome, curly-haired sophomore, he liked Debbie’s fun-loving nature and shared her desire to start a family. The two married in 1977, though Debbie had about a year left of college. “We were really in love,” she explains. “And I had my goals in life set: I’m getting married and having lots of kids.”

That fall, Dan attended law school at DePaul University in Chicago, while Debbie finished the clinical portion of her occupational therapy program at the University of Illinois at Chicago. In the evenings, they dreamed of a house with many bedrooms—and cooing babies to fill them.

By 1979, Dan had passed the bar and taken a job with a Chicago Heights law firm. The Greenbergs’ dreams began to come true: They bought a four-bedroom house in Park Forest, and in September 1980, Debbie learned she was pregnant, after just four months of trying. “I was elated,” she says. “I was sick as a dog, but it didn’t matter.”

At the time, Debbie worked with physically and mentally disabled children, alongside several other therapists in various stages of pregnancy. She found herself calculating the frightening odds she had learned in one of her college courses: “I remember thinking, At least one of us is going to have a child with some sort of disability.”

She took comfort in knowing that her baby wouldn’t inherit Tay-Sachs disease, a dreaded neurological disorder common to Jews of eastern European origin, known as Ashkenazi Jews. A blood test in college had determined that Debbie didn’t carry the mutant recessive gene that causes it.

Still, when Jonathan arrived in 1981, she grew worried when he couldn’t latch on to her nipple. “The nurse just said, ‘Oh, some babies are tired after the hard work of labor,’” Debbie recalls. But later, when no one was in the room, she clapped loudly near Jonathan’s head to measure his startle reflex. “Most newborns just jerk; it’s a normal response,” Debbie says. “But he would just start screaming. That’s not normal at all.”

The crying persisted at home. Only holding Jonathan kept him quiet, so Dan or Debbie carried him nearly 24 hours a day. By the time he reached two months, he still couldn’t hold up his head, follow motion with his eyes, or reach for toys. “You’re a first-time, neurotic mother,” a doctor told a concerned Debbie during Jonathan’s two-month checkup. “You have a beautiful baby; take him home and enjoy him.”

By six months, Jonathan was still functioning at a newborn’s level: He could not sit, roll over, make eye contact, grasp objects, or control his enlarged head. Even worse, the muscles in his hands had involuntarily contracted into clenched fists, as if he were locked in a rage from which he couldn’t break free. Distraught, Debbie found a new doctor. This one barely had to glance at Jonathan before packing him off to Children’s Memorial Hospital in Chicago.

There, Cynthia Stack, a pediatric neurologist, greeted Debbie and Dan in a clipped, professional tone. But when she examined Jonathan, Stack softened. “I think I know what you have,” she whispered in the baby’s ear, “but I sure hope I’m wrong.”

She wasn’t. After weeks of tests, the Greenbergs returned to Stack’s office to hear the diagnosis. By process of elimination, the doctor had determined that Jonathan had Canavan disease—a rare genetic disorder that, like Tay-Sachs, is more common among Ashkenazi Jews (who make up 90 percent of the U.S. Jewish population). Like the rest of the medical community, Stack knew frighteningly little about the disease: Passed on by a defective gene, the disorder causes the brain’s nerve-protecting white matter, called myelin, to turn spongy, leading to the deterioration of the baby’s central nervous system. “There isn’t a cure,” Stack told the Greenbergs. “He probably has a two- to three-year life expectancy.”

Dan and Debbie listened in shock. “I was in a state of total disbelief,” Debbie recalls. “I had still been hoping it was ‘just’ cerebral palsy.”

Joel Charrow, a geneticist at Children’s Memorial, delivered the second blow. The Greenbergs, he explained, had passed Canavan on to Jonathan via a mutated gene that both of them carried. Many Ashkenazi Jews—about one in 40—carry the gene. The carriers, including Debbie and Dan, are healthy; the disease occurs only when a child inherits the mutated gene from each parent. So, Charrow continued, every baby the Greenbergs conceived would have a one in four chance of inheriting Canavan. And because no prenatal test existed, the Greenbergs would have no way of knowing if a baby was afflicted until it was born and the disease’s devastating symptoms began to appear.